This is incredibly selfish of your FIL. I would be livid if this happened to me.

Anonymous wrote:
My dad has dementia. Therapeutic lies are not this at all. They are small lies to help not upset the person. For example, my dad doesn't remember that his favorite uncle has passed. When he wants to call him, I silence my cell and dial it from our landline. I tell my dad his uncle is out/napping/etc and have him leave a message. If he does remember later about the call, I say something like "yes, you did call Uncle Mitch. You talked about your garden this year." And he'll usually go "oh, that's right! I did talk to him." I don't say he talked TO my Uncle. I tell him he called him and talked about ___. Small lies.

Sometimes he'll wake up and think it's his birthday. We roll with it. We tell him happy birthday and have him select a special meal for the day. We get him a cupcake treat or some donuts, which are his favorite. No harm, no foul. And really, once you reach 75, why not celebrate all that time?

Side note: PP, just wanted to say that your dad is very lucky to have you. You seem to be approaching this with so much compassion and creativity. It's honestly inspiring to me as I grapple with my own dad's dementia -- you seem to have found a lightness or maybe just a matter-of-fact-ness to it that I hope I can similarly find as we walk this path with him.

Anonymous wrote:

Anonymous wrote:You are taking away her option of taking her life. Once cognitive impairments get too advanced, you lose that legal option. She may be past that already, but be aware that you may taking away her ability to legally end her life.

That's true. I understand FIL's motivations, but honestly, taking away agency from a patient is immoral and against medical ethics. My husband, a doctor, would have asked the patient whether or not she wants the "technical details" of her diagnosis or not. He would have explained the broad implications of the diagnosis regardless of whether the actual term was said out loud.

I like this option. It still gives the option of agency but without dropping it on their head - especially if they are not showing signs of interest or concern, or if the specific word "Alzheimers" is like a trigger (beyond the actual implications).

OP - do you really think she is the type who would prefer to take her life than live with an Alzheimer's diagnosis? And I mean like the PP above outlined - finding someone to assist and/or making it happen in a safe and humane way. I interpreted your original post to mean that she is the type that will be anxious and depressed about the "A" word and it would negatively impact her quality of life without adding any benefit. I didn't think you meant that you thought she would literally take pills that night after writing a letter to her husband. If that's her choice, I don't disagree. I might do the same. But I suspect it wouldn't play out so neatly for OP's ILs.

Also, OP, you say the doctor thinks it's likely she has Alzheimer's but it's not official yet. There are more tests. So one question is whether or not to continue pursuing the diagnosis. Yes, there are a few treatments but most have a low likelihood of long term improvement. We just went through this with my dad, and at first it was "age-related memory problems." Then it was vascular dementia. Then it was a more specific form of dementia. Nothing really changed at each step. If I thought it was creating anxiety and stress for him, I would have suggested stopping at the "age-related memory problems." Each time they had extra tests for him - PET scan, questionnaires, etc - we made sure he was okay with going.

So for your MIL, at each step you can ask "what level of detail would you like" and "would you like to take this test." If she is serious and determined like the PP above, then she will ask for the full report and will act accordingly, as is her right. But if she is not really with it, is not really driven to act, does not really want to know, then she might decline to continue the tests. She might be okay with a watered down description of the situation. But I really like how PP describes her DH as giving them the option to extract details at their own comfort level.

Anonymous wrote:You are taking away her option of taking her life. Once cognitive impairments get too advanced, you lose that legal option. She may be past that already, but be aware that you may taking away her ability to legally end her life.

That's true. I understand FIL's motivations, but honestly, taking away agency from a patient is immoral and against medical ethics. My husband, a doctor, would have asked the patient whether or not she wants the "technical details" of her diagnosis or not. He would have explained the broad implications of the diagnosis regardless of whether the actual term was said out loud.

This thread makes me absolutely irate that this country does not more easily/readily allow for physician assisted suicide.

She may have said that she did not want to live with Alzheimer's but she did not do anything. I am adamant, and take the SAGE cognitive assessment every six months. When I slip I'm using medical aid in dying which is legal in the early stages here in my country. In Switzerkand Dignitas says the only ones who choose it are people who are highly educated and have been proactive about it for many years. The normal behavior is to say you will kill yourself but not do anything to see if you have it.

So I would not bother to tell her. If she wasn't proactive to screen five years ago she really won't do anything now.

Anonymous wrote:As a nurse, I engage in therapeutic lies all the time with Alzheimer's and dementia patients. But this is not what that is. It sounds like she still is pretty early on in her diagnosis. The beginning stages of memory loss is often quite scary. You're aware enough to know you're losing your mind. It's cruel to withhold the diagnosis from her.

Does your FIL even get what the future looks like? How heartbreaking it is to see your loved one lose all memory of who they are and who their loved ones are? To lose the basic ability to use the bathroom, bathe themselves, communicate, remember to eat and drink, etc. I'm a fairly big supporter of physician assisted suicide after what I've witnessed in my career.

NP. I agree and I think it's completely unethical to keep this from your MIL unless that's what she wants. Admittedly, if she has no curiosity about the results of the tests and insists she's fine, then maybe she doesn't really want to know.

Personally, if I end up with dementia and I am able, I want the choice to end my life and not put my family through years of caring for me, or worse, having to warehouse me.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You are taking away her option of taking her life. Once cognitive impairments get too advanced, you lose that legal option. She may be past that already, but be aware that you may taking away her ability to legally end her life.

This. She doesn’t want to live with memory loss and she said that in a sane time. Honor her and that. Let her make a choice for herself. Support her in this journey. I’m sorry for her and for you all but please don’t take away her own freedom of choice.

All of what these PP said. When faced with an actual diagnosis, she might feel differently. But it is cruel to keep it from her.

+1 My mom suffered horribly for a very long time from dementia and it honestly destroyed my poor dad. It was devastating. My mom would not have wanted to live that way, the disease robbed her of all dignity and tortured her on a daily basis. I pray I don't ever have to make the decision for myself but I have the right to have a choice and so does your MIL. For my mom, the beginning stages were filled with denial (from her and my dad) and she got really good at hiding her symptoms until she could no longer do so.

You should tell her, when she is in a good state (because it tends to fluctuate) and see how it goes. If she's ready for the conversation, you can get some things done (wills, POA, etc) but be prepared to do it all and explain it to her , she cannot take initiatve or make decisions easily at this point. But there's no point in reminding them over and over they have dementia or saying "remember mom? I told you that yesterday/5 minute ago" because they dont remember and it is stressful.

as for understanding the diagosis: different people will deal with this in different ways. For us: about 6 months ago, my mother got the same diagnosis, after about 3-4 years of increasingly obvious cognitive impairment. Probably between stage 3-4. The doctor told my mother she had Alzheimers. She was upset and quiet for a little while. By the time we left the doctors, she had basically put it out of her mind and has never mentioned it since although she acknowledges sometimes that 'her brain is not working properly anymore.' I've once or twice brought it up and she literally cannot 'hear' me. I believe in her case it is also a psychological defense mechanism, or an aspect of the disease--it is literally uncomprehending, at least to her, what is and will happen.

Before this illness, she regularly said she would rather die than have Alzheimers. Now she is terrified of dying and clearly cant really comprehend either the disease or the concept of ending her life--but even just managing anything is too much these days. I will say that she's not prevented me from essentially taking over decision making for her and I am SO glad she's moved, and we've done some important paperwork before she was too far gone (the difference between last year and this year is tremendous). She moved to assisted living (memory care is on the horizon) and while she can still dress appropriately, read the paper and more or less convrse, she forgets so much and is confused about anything new. Moreover, she has a low set of demands-- she does not drive, shop, cook, use a computer, or a cell phone--she can't do any of those anymore. She can barely operate the TV (i wrote down how to press the button and ask alexa to put on a show). I handle medical appointments, bills, medication is managed by her AL, etc. What no one can really manage is her health or her emotional pain. I get dozens of calls a day and she is currently experiencing some sort of chronic pain for which there is no obvious explanation (multiple hospital and doctor visits). She is lonely, sad, and confused and I am stressed trying to balance it all. Last week I took two days off to take her to various appointments ,plus spent all day saturday in the ER. Her assisted living facility helps, but she still expects me to come daily (I cannot !).

There are two kinds of hard things dealing with this diagnosis for the family. First, is the actual management of increasingly disoriented loved ones, and finding the best way to care. The other is the heartbreak of watching someone lose not only their capacity to do things but the intrinsic qualities that made them who they were. My mom was a fantastic cook, keenly intersted in history, culture and world affairs, spoke 3 languages (plus read Latin), taught history, and almost completed a phd at harvard before having kids and stopping, etc. I really can't do much to help her, either, and that's heartbreaking too.

I wish you the best on this pretty awful journey. It sounds terrible but I now pray that my mother passes quickly without pain, rather than suffer for years in an increasingly agitated and sad state.

OP back. Thanks everyone.

I’m not aware of any plans beyond maybe medical POA and unsure if that.

I think FIL has been covering for MIL for months to years - just heard the story about her getting lost, for instance. Agree with PP that MIL is well within Stage 1 and declining rapidly.

FIL is a DIYer to a fault; hesitates to get any professionals involved for anything. He’s also stubborn, untrusting and cheap. Uphill battle to get him to ask for help, follow up appointments. Will not want to hire aides and or get caretakers - FIL already asked DH if he can provide breaks or ask our DC (college students) to help occasionally.

Eh, I’m not sure this is really that different. My mom also was terrified of getting Alzheimers and said that she would end her life. But as she aged and it became closer she insisted that she did not have Alzheimer’s, I think because she did not want to die. Even with those statements, at no point did it seem like it was the right time to take her life—since either my father or I would have to make it happen.


I think the question at this point is will telling her 1) lead to her executing enough executive functioning to commit suicide legally in a foreign country or to force their spouse to kill them and face all the consequences that come with that; or 2) terrifying a woman who doesn’t ‘t have the executive functioning to do anything about it. By the time most people with inherited alzheimers get there, they are in the second category and it is just profound cruelty to tell someone something that they cannot do anything about.

Now. If they have a plan and an agreement that was set in place before she got lost locally (which honestly is well past MCI and into stage 1 of alzheimers), and someone is ready to help her take her life, then please go ahead and tell your MIL. But otherwise, you’ve given her information she can’t understand or do anything about. This is exactly the circumstance for therapeutic fibbing.

It is 100% unethical for a medical professional. Patients have a right to know what their diagnosis is. She has a right to make decisions about her life while she has some semblance of her mind left.

Freaking awful.

With this disease you have to meet the person where they are and not who they used to be. And a big part of that is managing access to information in a way that is caring.

This is going to be a marathon, not a sprint. Telling the diagnosis is not a single moment in time. We are talking about someone with memory loss and a progressive disease. They are not going to remember things. Are you really going to sit them down every day or multiple times a day and tell them they have the disease they fear the most? Agitation, anger, anxiety are all common features of the disease and something caretakers will have to manage. The best skill for this is through diffusion techniques and lots of love/compassion.

That being said, it's a very personal disease and it is different for everyone. I have known people who found comfort in being told in a simple way when they felt frustrated because they could not remember or do something that they were getting forgetful. Using terms like "getting forgetful" and "your memory isn't as good as it was when you were young" get at the idea in a way that is accessible to them. They are going to forget what Alzheimer's is so you might have to talk in simple terms.

Right now, your FIL should be supported. If he feels it it would cause harm rather than comfort to her, then I would respect that. The very fact that your MIL feels that she is normal may be reason enough to withhold the information. She's going to feel like everyone is trying to convince her that something is wrong with her and she is going to be upset by that. There are MANY Alzheimer's patients in the late stages who can't do anything for themselves that insist they have nothing wrong with them! It's part of the disease.

Also, make sure you have a POA/AMD in place ASAP. You want to be able to step in and care of her when she can't herself (and also with alternates in case your FIL can't do it all). You will be making a lot of medical decisions without your MIL's input and that's okay. Doing things for her instead of with her will be the new normal.

My Dad had Alzheimer's. So did his dad before him. I'm well aware of what this disease brings and I know that chances are it's coming for me.

I don't think it is wrong to keep the diagnosis from your MIL. It would clearly cause stress since it's what she has feared for a while.

It's a sad and slow decline (or it was for my family) but medically assisted suicide, especially in the early stages seems over the top.

Anonymous wrote:Having witnessed severe dementia in my MIL, I would want to end my life if I were diagnosed with Alzheimer's. I think it's a reasonable choice and I would want to have that choice. TBH if your FIL and all of you knew what might be in store, you might support that too.

Yup. There are a small handful of illnesses that DH and I have discussed we would not want to live with.